Exceptional Parent Magazine, Organizational Spotlight:
Pediatric/Adolescent Gastroesophageal Reflux Association PAGER
Pediatric GERD is a common but easily overlooked medical condition.
By Jan Burns, M.Ed
PAGER Associate Director
My daughter, Rebecca Burns, came into the world pink and healthy. However, within days of her birth it was clear that something was wrong. Though I was a veteran Infant Intervention Specialist who had worked with many infants and toddlers with complex medical/developmental needs, even a medical degree couldn’t have prepared me for raising a child with severe gastroesophageal reflux disease (GERD) and asthma.
Special diets, tube feedings, multiple medications, breathing treatments followed by seemingly endless nights without sleep were standard fare. In a typical year, Rebecca had 50 clinic visits with a team of specialists, frequent hospitalizations and 75 prescription refills. Pediatric GERD requires 24/7 homecare. I was in a constant state of exhaustion, trying to manage her round-the-clock medical needs and I felt defeated because all of my professional training and previous parenting experience didn’t make a difference. Rebecca just didn’t eat, sleep or grow like other babies and I felt like a complete failure.
A turning point for us was finding the PAGER Association and calling its “Warm” Line. I spoke to PAGER Association Executive Director, Beth Anderson. It was a powerful experience to talk “mom to mom” about reflux, ending three years of isolation and finally feeling a sense of control over Rebecca’s medical condition. Through PAGER, I found other parents dealing with the same struggles and developed a network of support.
Beth Anderson started PAGER 11 years ago after the birth of her daughter Katie who suffered from severe GERD and food refusal, which led to failure to thrive. Katie cried constantly and woke an average of seven times each night. Beth coined the term “Intensive Care Parenting” to describe the level of care required to meet the complex needs of a child with GERD. She wanted to meet other moms and form a support group but was told by her physician that the condition was so rare that she would be lucky to find 10 moms to fill a room. Beth ended up finding enough moms for several support groups and eventually formed PAGER, to provide information and support to parents of infants and children with GERD worldwide. PAGER provides support to parents through a variety of services including phone support, a website and newsletter/publications.
I eventually became a trained parent volunteer and recently joined the PAGER staff as the Associate Director. I help guide parents through the medical maze and consult with school staff and parents about complex cases and educational issues. The PAGER network of 40 trained parent volunteers provide one on one phone support to the hundreds of parents who call the PAGER warm line. PAGER parent volunteers include physical and occupational therapists, speech therapists, a dietician and a nurse. The parent phone volunteers offer support, information about home care and links to information and services. It is extremely common for PAGER staff and volunteers to consult with teachers and therapists regarding their complex cases and educational issues related to GERD.
The PAGER website www.reflux.org is another outlet for information and support. It gets 50,000 hits in a typical month, and receives hundreds of inquiries from parent, physicians and professionals. PAGER hosts a very active discussion board and provides parent-to-parent support on every topic from medication to coping with lack of sleep. Other services include a quarterly newsletter; home care pamphlets, booklets and videos, lectures, parent conferences and regional support groups. Recent publications include: Dental Care for the Child with Acid Reflux and Going to School with Acid Reflux.
The PAGER board of directors oversees the operations and financing of PAGER and includes parents, professionals and physicians. Currently, PAGER is organizing a national medical advisory board.
In January 2003, PAGER launched a public awareness campaign called Gut Instincts-When you know something is wrong with your child with Dr. Bill Sears, nationally known pediatrician and best selling author, as the spokesperson. The campaign, sponsored by Tap Pharmaceuticals, includes a website for parents www.gut-instincts.com, a toll-free information line (866) KID-GERD, brochures for parents and physicians and a nationwide public service announcements. PAGER’s goal is to have this public awareness campaign lead to earlier diagnosis and treatment of GERD in children. GERD is often considered an adult disease and is often underdiagnosed and treated in children even though it is extremely common.
Families contacting PAGER often reported multiple family members and siblings with GERD so PAGER convinced a group of researchers to look for a genetic basis for Pediatric GERD. The researchers were able to discover a genetic link at Chromosome 13, q14. They are still looking for families with inherited GERD to help them find the exact gene and see how many variations exist. More research is needed on the genetics of Pediatric GERD, as well as its cause and treatment. PAGER is currently seeking a collaborator for a pediatric GERD prevalence study since a comprehensive study has not been done to date.
Each year, PAGER staff and families join the Digestive Diseases National Coalition for Hill Day. PAGER moms and babies, with strollers and a diaper bag heaping with medical supplies and extra clothes have walked the halls of congress to lobby for greater awareness and funding for research. Recently, PAGER staff members were asked to testify before the House Appropriations Committee on the need for funding on the key needs of research, treatment and education regarding Pediatric GERD. PAGER would like to see the National Institutes of Health and the Centers for Disease Control study the prevalence and causes of Pediatric GERD, fund a comprehensive public education program and disseminate guidelines for the diagnosis and treatment of Pediatric GERD to physicians.
PAGER recently formed a coalition of digestive disease support/advocacy organizations to introduce a bill before congress to institute national insurance coverage for medical foods such as special formulas. Many infants and children with GERD need a special formula because their GERD is actually due to underlying milk/soy/ protein intolerances. The cost for special formula/medical foods can be prohibitive for the average family already facing catastrophic medical bills.
The prevalence of pediatric GERD in the population of children with disabilities and those at-risk for disabilities is much higher than the typically developing population. Estimates range from 50-75% for children with Down syndrome, cerebral palsy, autism and prematurity. In addition, medications given for hyperactivity, seizures and muscle relaxation may cause nausea, vomiting and reduced appetite, exacerbating the symptoms of GERD. Children with multiple medical/developmental problems may be underdiagnosed with GERD due to the multitude of severe and complex problems they are facing. A non-verbal child in pain from GERD may exhibit fussing, crying, aggression and clinging behavior, leading to a diagnosis of a behavioral problem. PAGER has received numerous requests for information from parents of children with special needs since GERD is so prevalent in this population.
One parent who found answers through PAGER is Julie Waite. Julie contacted PAGER about her son Jeffrey who had GERD as an infant and at age 2 was still suffering from daily vomiting, screaming and tantrums. The specialist treating Jeffrey felt that the vomiting was behavioral and related to his diagnosis of high functioning autism/hyperlexia and suggested that Jeffrey needed anti-anxiety medication to deal with his frequent outbursts. Armed with information about GERD symptoms from PAGER volunteers, Julie sought out a physician who listened to her concerns and provided a treatment plan for the medical symptoms. Within 2 weeks of beginning medication for GERD, Julie reports, “The medicine helped dramatically and his screaming all but stopped. Jeffrey’s language came quickly after being on medication for two months and now at age 3, he speaks well. PAGER has given me my sanity!”
PAGER Association looks forward to a time when pediatric GERD will be diagnosed accurately and treated promptly, and ultimately eliminated. Until then, PAGER will continue to strive to make pediatric GERD a household name and to provide a network of support in every community to bring hope and relief to all those coping with this demanding condition.
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